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Monday, September 26, 2011

More Uh-oh PEAS!!!

You know how sometimes you think that by using technology, you are saving youself some hassle and giving you a few free moments to finish getting dinner done...Well, I did that a few weeks ago.  I used my laptop to entertain Kyli for a few minutes.  Both of my kiddos LOVE music so I pulled up some music on UTube, Single Ladies from Beyonce. It made quite an impression on her.  After she had watched the video, I came over to put another video on, she screamed at me!  She said "more uh-oh!", over and over again.  Technology has made things a little more difficult for us.

It has been been a few weeks and I think Kyli has become more obsessive about this song.  ANY TIME she sees a laptop she says "Uh-oh more peas!"! She calls it uh-oh.  If you play it once, you will have to KEEP playing it until she has decided she has had enough, that has gone up to 10 times at the most.  The odd thing to me is that she does not dance!! Most babies when they hear music, they dance.  Not Little Miss Kyli she watches in awwww...I am going to have to get her in a dance class soon, so she can learn to dance and LOVE IT!!!

 

Monday, September 19, 2011

The Little Things

My sister, Randi and I are about 9 years apart.  Even with the large age gap, we are close.  I never thought I was going to have a sibiling and when I found out I was going to get one, I did not care whether it was a boy or girl, luckily I was blessed with a little sister.  We have one of those special relationships, we rarely fight, in fact I cannot think of us EVER having a blowout fight and it is hard to think of even a little fight, that is just the way it is.  Maybe it is because of our age gap, but I love her to death and will do anything for her! 

Anyway, when we had Kyli, our second baby, I had high hopes that her and her big brother, would have a similar relationship.  I want them to be close and I have been told that that will all change for some years once puberty hits, I hope that they can regain it or that it never leaves.  So, when Kyli was born, instantly I saw Noah was happy to have her, he loves her and was more angry at me for leaving for about 30 hours rather than me bringing home a baby.  He loved her, wanted to hold her, give her kisses and wanted to play with her before she could play. 


As they have gotten older, I have watched the sibling bickering start and try to tone it down a bit and teach them to share and love each other even at their worst.  

The other day I was folding laundry and came out of the laundry room into the family room and found them like this...


I grabbed the camera as quick as possible because I don't think anyone would believe me other wise.  Mike was at school, so I had to show them to him and told him, we must being doing something right...I hope these are the memories that they remember.  They are so similar but SO different at the same time.  I just hope that Mike and I continue to love and nourish their relationship and they only grow closer.  I just LOVE my babies and they have taught me more in their lives than I ever thought possible.

Saturday, September 10, 2011

Not Always What You Expect Pt 2

Kyli's story is a little different than Noah's. She is healthy and falls in the proper areas on the growth charts.  She doesn't have allerogies like her big brother...



Kyli's story starts on the second day of her life.  A gentleman came into our room and asked if he could take a sample of blood from Kyli's cord.  He was here speaking for a study called TEDDY (The Environmental Determinants of Diabetes in the Young.) With the blood from his cord they would test to see if Kyli had a gene that puts her at a higher risk of developing Type 1 diabetes, also know as juvenile diabetes. The TEDDY program is a study to try and determine the enivromental factors that cause children with the high risk gene to develop juvenile diabetes.  Mike was on his 2nd deployment at this time and my Mom was with me for Kyli's birth and stayed with me at the hospital.  When this gentleman came in we both looked at each other after hearing his speech and knew that this is something Kyli was meant to do.  Some background, my Mom is a juvenile diabetic, she was diagnosed when she 10 years old, after many months of being ill.  She lost a lot of weight and had many of the symptoms of a undiagnosed diabetic.  Both Mom and I felt that if we could protect Kyli from ever having these symptoms that we should.  So, I signed the the release granting TEDDY some of Kyli's blood and forgot about it for a month and half and enjoyed my 2 kiddos. 

In February of 2010, I received a large envelope from TEDDY.  Immediately, I knew that Kyli had to have the gene.  It was like when you applied for college, if they accepted you, you received the large envelope and if they denied you, you received the normal letter envelope.  So, without opening the envelope, I bundled up the babies, and took them and my envelope to my Mom's house.  Mike was not scheduled to come home for at least another 4 months. When I got there, my Mom was not home, so we waited.  When she got home, I opened it and read the news I already knew.  Kyli has the gene they look for that puts her at a higher risk than other children.  I was in tears.  I have been through enough with my Mom to know that it is not as easy as it seems.  As a matter of fact, in January, just a month before, my Mom and I had attended her orientation for a kidney transplant that was diabetic related.  That same day, I called TEDDY and said yes we want to be a part of the study. Our first appointment was scheduled for when Kyli turned 3 months...

The first TEDDY appointment was a lot of information.  The basic idea is this: for juvenile diabetes they look for 3 antibodies.  They have ranges of safe numbers, but when the amount of the antibodies gets over a certain range, they then consider the antibody overly active and assume that the antibodies are attacking the body, usually the pancreas.  At each of Kyli's visits, every 3 months, they take blood from Kyli and test it for the three antibodies.  Luckily, they have this AWESOME numbing agent for their arms.  If she showed positive, then they would notify us and we would go from there.  They said most the time that the children never develop the antibodies and that they use the information they get about the children's environment to apply to the study.  Seemed easy enough and I agreed to put Kyli in the study, we can help children in the future with the information they gain from Kyli and kids like her.

All was fine for her 2 visits, no anitbodies, just a healthy baby.  On 10/13/2010, I received a letter stating that Kyli was showing an elevated number on one antibody.  I received a phone call soon thereafter and was told that a lot of children at some time or another will have one elevated antibody; they do not know why, but it happens.  Usually, they said, it will go away in a couple visits.  Well, I was thinking about Kyli's visit and "realized" that Kyli was getting over a cold when we had that visit, so for sure the next one I would have to make sure she was healthy and we would get accurate results. The next visit happened, 6 weeks later we received another letter.  Her antibodies for that particular one had nearly doubled.  Another 3 months go by and we have another visit, another letter, once again the antibodies doubled and this time I notice that another had elevated, but was not in the red zone.  Another 3 months, another test, another letter, this time she has 2 antibodies elevated.  I got two phone calls, one from our nurse and the other from one of the doctors.  I was told that the next visit was going to be longer so they can explain how the study is going to change for Kyli. I was also told because she has 2 out of 3 antibodies, she is at an even higher chance now of getting Type 1 Diabetes.

So, we showed up to this last appointment not knowing what to really expect, except that the open is double the time.  They sat me down and told me that they are the line to keep us from going into denial that Kyli will not get sick.  They will have to be mean sometimes to get through to me, but that they are only doing it because they care.  We did our normal routine, weight, height and blood. They then instructed me how to take a sample of Kyli's blood with a meter, I tried it on myself first to see how painful it is and then had to do Kyli.  This was the part I was not looking forward to, I remember how much it hurt when my Mom used to test my blood when I was little. Talk about a change, the needles that stick your finger are less than half the size of what I remember.  I did not feel it and neither did Kyli.  She was more upset that I had to squeeze her finger to get enough blood to put on the blood stick.  It was easy and now I can test her sugars at home and make sure she is feeling okay. It actually gave me comfort.

We are currently waiting for the results from the last appointment.  While it causes some anxiety, I think more about if Kyli ends up getting diabetes rather then these next results.  I have cried many times over this and keep hoping that each time we have her blood taken the results are going to change for the better.  I know that children are diagnosed with diabetes often enough, but it is hard to think that someday either in the near or distant future, we may get a phone call from the TEDDY study telling us that Kyli is now diabetic and we need to come and meet with all her new doctors.  It breaks my heart to think about this and how her life is going to change.  I think about all the hardships that my Mom went through and how something as simple as walking a 5k can affect her sugars.  I think about how I want Kyli to be active and how she could have her sugars bottom out and that we will all have to learn how to keep her healthy.  Kyli will have to have shots if she gets it and that just seems cruel to have to give her injections multiple times a day; that means I will have to inflict pain on my child daily, mulitple times and it makes my heart hurt.  I just don't want it to happen.  The huge positive to her being in the study though, is if she ends up becoming diabetic we will know quickly and she will not get as sick as my Mom did before she was diagnosed; for that I am grateful. 

I know that other kids have been diagnosed with things much worse than diabetes, but at the same time any hardship on a child seems like cruel punishment to me.  I often think that issues Kyli may have could be worse, but why does it have to be anything?!

I guess the hardest part of this, is waiting and not knowing the outcome.  IF she will become diabetic and IF, when?  I try to stay positive but sometimes it almost seems easier to just think that she will get it and be prepared for it.




Thursday, September 8, 2011

Not Always What You Expect

Life does not always give you what you expect.  While life has not been "hard" on us, it has not been easy on us either. Both of our kiddos have had some trials and for me, have taken a toll at one time or another.

Here is the health challenge we have had with Noah...



Noah was born very healthy, one week and one day late and 9lbs 2 oz, 22 inches long.  He was overcooked I tell people.  He was lifting his head off my tummy, seconds after he was born.  From the beginning I chose to breastfeed and from the beginning Noah had a rumbley tummy and seemed miserable.  I cut out different foods from my diet and discovered he could not handle dairy well, including when I ate it.  Not even 2 months after he was born, I got so sick that I had to stop breastfeeding for 11 days to take antibiotics. Unfortunately, I did not have a back stock, so we had to put Noah on formula. For a full 8 hours, Noah screamed bloody murder becuase he wanted Mommy's milk and could not have it.  He finally gave in and drank almost 8 oz.  After this, Noah got half Mommy's milk and half soy formula.

 At one year, we decided to try gradually putting him on whole milk like all other babies get.  He seemed to adjust just fine, or so we thought.  At 13 months, Mike left for his first deployment and I was left with a sick baby.  I thought it was just a cold, but 2 months later, Noah still had a runny nose and was constantly wheezy.  I took him to his 15 month checkup and the doctor gave him a clean bill of health.  Immediately I told the doctor, no, he always has a runny nose and wheezes for no reason.  The doctor double checked his ears, nose and throat and said words that were horrifying to me.  "We are going to check Noah for allergies." They did a RAST test and 2 weeks later I got a phone call from the doctor while I was at work.  I was told that Noah did indeed have allergies, but one of the allergies came as a surprise; I was told he had allergies to dairy and to peanuts.  The worst thing was that the nurse asked if I would like an appt with the doctor.  Are you kidding?! Of course I wanted an appt.  I needed to know what I needed to do next to get Noah feeling better.  I am going to assume like all other parents, I felt like a failure for a bit.  I let him down.  I couldn't make a healthy baby and then I was too stupid to notice the difference between a cold and allergies. And the whole idea of a peanut allergy made me feel like my whole world was closing in and that there were SEVERAL things that Noah would never get to experience.  The worries about Noah having a reaction if he was around someone who had eaten a peanut butter sandwich or heaven forbid, being on an airplane and they serve those stupid little bags of peanuts.  It felt like we were now restricted to things that would keep Noah safe from interacting with anyone that might worsen his allergy.  It was something that I lay in bed at night and lost sleep worrying over.

When we went and saw the doctor (who thought an appointment was optional), he told me how bad Noah's allergies were.  For allergies, Noah's numbers were low for both.  We were told that the dairy usually gets better and most kids grow out of the allergy by kindergarten and that the peanut allergy ONLY gets worse.  I was horror stricken that if we kept peanut butter in the house and he got a whiff, it would only make it worse.  I went home and cleaned out our cabinets, and let me tell you, it did not leave much.

Luckily, Noah adjusted quickly to soy milk and did not notice the huge change in his diet.  (I did, it was like starting solids all over again with him and I was having to start with brand new foods that neither of us have ever tried, all the while Noah and I were on our own and Mike was trying to be as supportive as possible overseas.) Noah's runny nose and wheeziness faded quickly and I finally felt my little guy was finally healthy and happy like he should be.

Noah is now getting ready to turn 5 in November.  He still has allergies, but it is not the same.  In January 2010, while Mike was on another deployment, my Mom and I took Noah to National Jewish to have Noah retested.  We felt that this was necessary, since I had read a few articles stating that the RAST test was not accurate for children under the age of 5.  Noah was 15 months and right before he was tested, he had eaten peanut butter and had no trouble that I had noticed.  This time the testing at National Jewish consisted of two tests, the RAST test and a scratch test.  For both tests, Noah tested negative for allergies to peanut butter and the dairy test showed positive.  The RAST test numbers had actually improved and they were about half of what they used to be.  So like our original doctor had said, it was getting better with age.

The next step was to come back to the hospital and do a peanut challenge.  So on a cold day in January, we went back to the National Jewish Hospital. Just Noah and I for a day at the hospital to see if Noah would have a reaction or to see if the sun would start shining and we would be able to add another food and so many more options of things to eat for Noah.  We arrived early and the children's ward was empty. Noah became quite uncomfortble with the sterile environment and stayed close to me.  The nurse called us and they checked Noah's weight, height and temperature.  She then asked me what the best way would be to let Noah eat the peanut butter.  I told her on a cracker. She said that she would get that ordered and would be over in a mintute.  By the time she came back, the ward was awake and there was a handful of kids hanging around.  The nurse brought us the peanut butter, but apparently had been sleeping while we were talking because she brought it in a little white paper cup.  Noah looked at it and said "No." My heart dropped, I never thought that it would go like this, I thought he would try peanut butter and we would find out if he had an allergy or not. So for the next three hours, I tried to bribe Noah into trying peanut butter, we even went to the gift shop and spent almost $2.00 on a Reese's Peanut Butter Cup to get him to try it.  Nope, apparently Noah was having a stubborn moment and kept the door closed to a new menu at our house. 

Noah is able to tolerate a little bit of dairy now.  He can have a little ice cream, a slice of cheese, or a cup of yogurt.  If he has too much we know, but it is a step in the right direction.  Just the other day I asked Noah if he would let Daddy and I take him to the hospital again and try peanut butter. Besides looking at me like I was stupid, he told me he would not try peanut butter, even if is was a peanut butter cup (he does not know what he is missing), but I know he would LOVE it. 

I have a strong feeling that Noah does not have a peanut allergy, I do not know if he grew out of it or never had it, but besides Noah we know one other little guy that had low allergy numbers like Noah for peanuts, who no longer has the allergy.  I would like to think that Noah can eat it but now chooses not to.  After all, nowadays he has alternatives, like sunflower butter, and he LOVES it.  While I know lots of other people who have had experiences more challenging with their kiddos, this is the story of ours with Noah.  Personally, this originally brought me lots of tears, but in the end, I think it has made us stronger as a family.  I truly believe that God only gives us as much as we can handle and no more.   Kyli's story will follow soon.